I came into Tuesday September 22nd expecting this to be the last day of preparation for my back surgery at 6 AM Wednesday. The problem was that the other issues with my body had been mounting and there was something that just didn’t feel right about this being up early a pinched nerve in my lower back. Over the course of the weekend my left arm in particular had gotten much much weaker and while it was initially subtle, starting that Friday I was holding my left arm awkwardly when I walked or moved around.
There were also some really funny indications. We had 4 or 5 families over to watch the Ravens game Sunday afternoon and had a phenomenal afternoon with kids running around, a couple beers, and general indoor & outdoor chaos and football. By this point I was having some trouble getting around and I was set up on the end of the couch next to my buddy Adam Phippin. I kept beer in my favorite big heavy mug on a shelf behind his head and every time I wanted to have a sip I had to reach over and grab it anew. I bet I hit Adam in the head 15 times with that mug and I just couldn’t navigate the space from the shelf to my mouth. It became a running joke.
I finally decided to make a big stink about this to the doctor the day before surgery. I’ll admit at least part of it was nerves related to the surgery but it was also clear something was not right . I sent a note to the doctor just to be clear – yes I was nervous – yes I was compensating with my right side due to the problems on my left side – and yes my weakness was definitely impacting my sleeping. but something more than just a left leg issue was happening here. Is this normal? Do other people go through this? What do we have to do to help me understand what is happening?
The doctor was incredibly responsive and receptive to everything that I said and he immediately suggested that I get MRIs on my neck and brain as precaution. He gave me 2 places that I should try and get them done that day but at the same time we decided we were going to move forward with the surgery because as he had said before the lower back MRI was just so clear that there was no question that this procedure needed to be completed at some point.
This moment began a really important stretch of great luck that set me up in the great situation that I’m in today. The doctor suggested two potential places for the MRIs and while the first one didn’t have any availability that Jenn and I could make it to, the other had their very last opening available in Anne Arundel Medical Center. At 8:45 PM on Tuesday I rolled into the machine and was out around 10:15. By the time Jenn and I got home around 11pm I had a voicemail from my back doctor to give him a call about what the MRIs had shown and plans for Wednesday morning.
When I called the doctor I could tell something was wrong immediately. He was very professional but also very emotional as he told me the news that basically my neck MRI looked great but surgery Wednesday morning was off because they had found a mass in my brain. While neurosurgeons are wired differently than the rest of us because of the emotions that deal with clearly this was some pretty heavy stuff. I was lying in bed getting ready to crash for an early morning, figured this would be a 5 minute phone call to confirm the precautions had been smart but ultimately unnecessary and instead my voice is cracking as I’m relaying the news to Jenn that I had a brain tumor. It is just not something you ever expect at 41 years old, but you don’t need a medical degree to hear the words ‘the MRI identified a mass in your brain’ are the first words in a different, scarier, life than you had been dreaming about 30 seconds earlier. A mass in your brain can never be a good thing.
The doctor had already reached out to her neurosurgeon friend of his who made several recommendations for who I should reach out to and though there were a few tears and a ton of concerns, I fell asleep with Jen’s head on my chest knowing that Wednesday morning we would be coming into the day to take care of a totally new set of issues.
There are a lot of lucky moments throughout this story but that Tuesday evening into the groundswell of support Wednesday morning might be #1. I came close to not sending the message to the doctor about the problems I was having because they felt sort of explainable, but if I had gone through with the surgery it would have been between one and three months before I decided to get this checked out because I would have attributed all of these other issues to the surgery, the painkillers, the sedentary lifestyle I would be adopting, and so many of the of the other changes in my life that could’ve impacted my body.
As you read this blog you will hear a lot about the community around me and all of the amazing ways that they have helped me, but in my mind Team Rex formed and went into high gear that Wednesday morning. The level of energy, the avenues of support (some expected, some just-the-right-friend-of-a-friend with the right access), some aggressive persistence, and a few markers called that crucial Wednesday morning coming out of a devastating Tuesday night turned this story from a tragedy to mission. It very quickly became clear that Johns Hopkins was where I wanted to be to take care of this issue and then it just became a matter of figuring out how to get in touch with the right people. I had multiple friends in the medical community like Brian Wallace, Pete Canon, Mrs. Higgins and my back Dr. reaching out to get in touch with the right doctor to take care of this problem. My in-laws and wife’s friends were working back channels I couldn’t even keep track of but from my very first conversations the name Dr. Weingart popped to the top of the list and it became my mission to have him as my doctor throughout this process. Through dozens of calls, the bugging of his residents, the escalation through friends and extended family in the JH system, by 2 PM Wednesday I was on the phone with Dr. Weingart and he had agreed to take my case. On the call he asked me how I knew ?Doctor Pedactor? but so many people had been working so many backchannels I didn’t even know how to guess who that was so I went with ‘an old friend’. We agree to meet in for an appointment Thursday, and I spent the rest of Wednesday feeling solid about the plan. I still didn’t know much about what was happening and I hadn’t had time to process much, but I was young, healthy and lined up with my first choice doctor for a mid-day meeting the next day, Thursday, 10/17. It Felt like the best possible place to be… you know…once you accept the brain tumor thing.